Concert for Koda

TIA Clayton proudly describes her son as a "professional bum shuffler".

Born 15 weeks early and with a rare chromosomal deletion, Koda Schulze, now 4, had a tough start to life.

He weighed just 770 grams (1 pound, 11 ounces) when he was born.

"I'd only found out I was pregnant at 11 weeks, and then Koda came along so early (at 25 weeks), so we didn't have a lot of time to adjust to the idea that we were having a baby," Ms Clayton, of Ballina, said.

"I just started having these pains. I didn't realise I was in labour."

Koda's dad, Kye Schulze, was equally surprised when he got the phone call and found out that Ms Clayton was going to hospital.

Ms Clayton was flown by the Westpac Life Saver Rescue Helicopter to the Mater Mother's Hospital in Brisbane, where she gave birth to Koda two days later.

"Koda was as long as a tissue box and his little fingers were the size of cooked spaghetti," she said.

"Then around Christmas 2007 he was really touch-and-go. He almost died a few times."

Koda spent more than four months in hospital and, when he came home, was on oxygen 24 hours a day, every day, for two years.

Doctors finally diagnosed Koda with 1p36 Deletion Syndrome, a rare chromosomal deletion which causes delays to development, speech and growth, as well as hypotonia (muscle weakness).

He also has chronic lung disease, recurrent kidney stones, eczema and hundreds of scars from multiple medical procedures.

He's not yet walking, but gets around quite well with his "bum shuffling" technique, and he is starting to learn some sign language.

Mr Schulze says he is extremely proud of his son.

"It's been a long and hard road, but you kind of forget all of that when you look at him," he said.

"He's just a happy kid."

Koda's bright demeanour is exactly what caught the attention of Tanya Coggan, whose son Jack went to the same day-care as Koda.

"I would always get greeted with a massive smile every day," she said.

"He is just so incredible.

"There's something about him.

"But I knew I wanted to do something to help."

A fundraising concert will be held at the Alstonville Showground on April 14 from 10am until 6.30pm, and costs a gold coin donation for parking off Green St and a gold coin donation for entry.

"It's turned into a massive thing now," she said.

"We've got 11 bands and everyone has just been so great ... what we really need now is for people to come along on the day."

For information on Koda's Concert, or to donate, visit kodasconcert.com.au or call 0414 358 390.